[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 537 Introduced in House (IH)]
106th CONGRESS
2d Session
H. RES. 537
Expressing the sense of the House of Representatives with respect to
the serious national problems associated with polycystic kidney
disease.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
June 27, 2000
Mrs. Thurman (for herself and Mr. Shaw) submitted the following
resolution; which was referred to the Committee on Commerce
_______________________________________________________________________
RESOLUTION
Expressing the sense of the House of Representatives with respect to
the serious national problems associated with polycystic kidney
disease.
Whereas polycystic kidney disease (``PKD'') is the most prevalent life-
threatening genetic disease in the United States, affecting more
Americans than the combined number of those in the United States who
have cystic fibrosis, sickle cell anemia, hemophilia, muscular
dystrophy, Down's syndrome, and Huntington's disease;
Whereas an estimated 600,000 American's have received ``an inheritance they
don't want and can't give back'' in the form of a dominant genetic
``bequest'' called PKD, and countless additional friends, loved-ones,
spouses and care givers must shoulder the physical, emotional, and
financial burdens it causes;
Whereas PKD is a severe, monogenetic disease that has a devastating impact, in
both human and economic terms, on Americans of all ages and equally
affects people of all races, genders, nationalities, geographic
locations, and income levels;
Whereas, based on NIH prevalence estimates for PKD in the United States,
approximately 1,400 PKD patients reside in each of America's 435
Congressional Districts;
Whereas the vast majority of those who have PKD reach kidney failure and do so
at the average age of 53, and since the largest segment of our
population, America's ``baby boomers'' are rapidly reaching that age,
PKD may well cause a colossal strain on dialysis and kidney
transplantation resources and on the general delivery of health care in
America;
Whereas PKD is one of the four leading causes of kidney failure in America,
causing approximately 2,000 new cases of end stage renal disease
annually and premature death for an estimated 1,000 to 1,500 people
annually as the direct result of this horrific malady;
Whereas end stage renal disease is the fastest growing component of the Medicare
budget each year and PKD contributes to that cost by an estimated
$2,000,000,000 annually for dialysis, kidney transplantation, and
related therapies;
Whereas the fear of an unknown future with a life-threatening genetic disease,
the apprehension over possible genetic discrimination, the severity of
the symptoms which PKD patients suffer through, and the limited public
awareness of the disease causes many to live in denial and thus forego
regular visits to their physicians and overlook good, general health
management;
Whereas PKD frequently goes undetected and an estimated 500,000 of the 600,000
Americans who have it don't even know it, often resulting in devastating
emotional trauma when a diagnosis is finally made;
Whereas PKD is a systemic disease that causes other major risk factors to ones
health that requires prolonged and expensive treatment for symptoms such
as high blood pressure, critical kidney infections, frequent episodes of
kidney stones, potentially life-ending aneurysms, polycystic livers,
polycystic reproductive organs (ovaries and testes), polycystic
pancreases, abdominal hernias, diverticulitis, and two forms of heart
disease;
Whereas many Americans with life-threatening genetic diseases like PKD are at
risk for losing their health and life insurance, losing their jobs and/
or their chances for promotion because they have a preexisting chronic,
potentially lethal and costly disease;
Whereas those individuals who have chronic, life-threatening diseases like PKD
have a seven times the national average predisposition toward depression
and its resultant consequences;
Whereas there is currently no method to prevent, treat, or cure PKD, nor is
there any current procedure to control the progression of it;
Whereas reducing the tremendous health and human burden of PKD and its enormous
economic toll depends on discovering a treatment to stop it in its
tracks and ultimately producing a genetic ``preemergent'' form of gene
therapy to break the chain of genetic inheritance for future generations
of Americas's PKD families;
Whereas improvements in diagnostic technology and the expansion of scientific
knowledge about PKD have led to the discovery of the two primary genes
that cause PKD, the two primary protein products, and the understanding
of cell structures and signaling pathways that cause cyst growth are
predictive of the development of interventional therapies in as few as
five years given the appropriate public and private funding of
biomedical research;
Whereas the scientific momentum in PKD research has caused the head of America's
Human Genome Project, Dr. Francis Collins, to call PKD ``one of the
hottest areas of scientific investigation in all of biochemistry'';
Whereas after extensive review and deliberations, a panel of top PKD scientists,
sanctioned and convened by the National Institutes of Diabetes,
Digestive and Kidney Diseases (``NIDDK''), has found that ``the field is
on the threshold of major advances, but that effective treatment of the
polycystic kidney disorders will require the efforts of scientists and
physicians from nearly all of the disciplines of renal science, and will
require NIDDK to strongly commit to substantial increases in research
funding now and in the years to come'';
Whereas NIDDK's expert PKD Panel has developed the PKD Strategic Plan in which
they have identified a comprehensive strategy for PKD research leading
to a treatment and cure to be funded by the National Institutes of
Health, and has recommended a base funding level of $20,000,000 for PKD
research at the National Institutes of Health in fiscal year 2001; and
Whereas the House of Representatives as an institution and Members of Congress
as individuals who represent America's 600,000 PKD patients are in
unique positions to help raise public awareness about the need for
increased funding for research leading to a soon treatment and cure:
Now, therefore, be it
Resolved, That it is the sense of the House of Representatives
that--
(1) the Federal Government has a responsibility--
(A) to continue to increase research funding, as
recommended by NIDDK's expert PKD Panel in its PKD
Strategic Plan, so that the development of a treatment
and cure for PKD may soon be discovered;
(B) to endeavor to raise awareness about the
importance of early diagnosis, strict blood-pressure
control, and timely treatment of PKD symptoms;
(C) to continue to consider ways to improve access
to, and the quality of, health care, dialysis, and
kidney transplantation or PKD and other kidney
patients; and
(D) to take an active role in increasing organ
donation across the country;
(2) all Americans should take an active role in reviewing
their health condition and noting if they may have PKD symptoms
such a family history of kidney disease, frequent kidney and/or
urinary tract infections, frequent episodes of kidney stones,
chronic lower-back or flank pain, high blood pressure, and
blood in their urine; and
(3) national and community organizations and health care
providers should endeavor to promote awareness of PKD and its
complications and should encourage early detection of PKD
through regular screenings, education, and by providing
information, support, and access to services.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Commerce.
Referred to the Subcommittee on Health and Environment.
Llama 3.2 · runs locally in your browser
Ask anything about this bill. The AI reads the full text to answer.
Enter to send · Shift+Enter for new line